Apr 30, 2018

Anthony welcomes the recent ‘positive’ recommendation for Nusinursen (Spinraza) for PBS listing

The Spinal Muscular Atrophy (SMA) community will benefit from the recent announcement from the Pharmaceutical Benefits Advisory Committee (PBAC) which has given a ‘positive’ recommendation for the drug Spinraza (Nusinursen) to be listed on the Pharmaceutical Benefits Scheme (PBS).

This recommendation would see paediatric patients with Types 1, 2 and 3a SMA be able to access this drug at a vital age before the severe degenerative effects of this disease take hold. SMA is the childhood version of Motor Neurone Disease which causes progressive deterioration of the muscles; affecting everyday tasks such as sitting, walking and even swallowing.

Having access to this drug at the early onset of these symptoms is important to stop the disease progressing, and give children who suffer from SMA the opportunity to reach their developmental goals. SMA Australia Inc. CEO Julie Cini welcomes this decision from the PBAC, as well as the announcement from the pharmaceutical company Biogen who will grant compassionate access to the drug for patients who fulfil the PBS criteria from 1st May 2018. This will be free of charge for patients whilst the SMA community continue their discussions with Minister Hunt in regards to securing Government funding for the drug.

Federal Member for Holt Anthony Byrne MP has praised Ms Cini for her continued campaigning efforts in getting this positive recommendation from the PBAC. Mr Byrne and Ms Cini held a Parliamentary event in Canberra on Wednesday 16th August 2017, to promote awareness of the disease as well as the positive results of Spinraza in preparation for a PBAC decision on the drug in December. The PBAC decision on 15th December 2017 did not recommend Spinraza for PBS listing, subsequently Ms Cini worked with Mr Byrne to table a petition to Parliament calling for the Government to fast-track the drug for patients with SMA.

The petition was highly successful with over 11,000 signatories, and gained media attention as well as the consideration of Parliament. “Julie’s determination to promote this drug through the media, petitioning and meetings with Parliamentarians is an example of our Parliament at its best.

We have worked in a bipartisan manner to ensure that people affected by SMA achieve the best outcome. It’s been a long journey which would not have been possible without the effort of a community champion such as Julie” said Mr Byrne in response to the SMA media release.

The SMA community now eagerly wait Minister Hunt’s announcement of the listing date.

Media Enquires: Daniel White (03) 9796 7533

Authorised by Noah Carroll ALP Canberra


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